A Brief Pause While I Whine

I've been in this weird place between too much activity, too many ideas and not enough time. Thus I've got a whole series of posts written in my mind yet I've got to pause them and whine about myself.
It's my body. It's betraying me.
The betrayal in minor in nature, at this juncture. It's hives. It might sound like nothing and in fact it started out as sort of a rather run of the mill "Hmmm I wonder what I touched that I'm allergic to" sort of thing.
Then it continued, and got worse.
The hives arrive in swaths, on my arms, my legs, my back, my butt, my abdomen and now this week my neck and face. They arrive intermittently and leave after I get to the point where I think "OK NOW I REALLY CAN'T TAKE IT ANYMORE" they simply fade away. They come they go. They arrive when I'm working, when I'm walking, when I'm dining. They erupt during work outs and fade away as it suits them to do. I'm in some sort of hell driven by burning, itching patches of skin that are driving me mad.
I've been a good sport these past few weeks. I have complained intermittently. If you're on my Facebook it might feel like I've been complaining constantly but rest assured, if that were the case you'd have removed me by now. In fact I'd be over there complaining this very instant if that were the case. But my foresight in complaining on Facebook and taking pictures actually provided me with very good documentation and timeline for my doctor, even if it was peppered with commentary like "IT WAS MUCH WORSE THAN THIS I PROMISE YOU" when I shared it with him.

It's been going on for weeks and basically according to the internet I'm going to die a horrible death. That's pretty much all I could discern. I tried apple cider vinegar and essential oils but alas science had to come into it and thus I sat in Dr Sexy van Gogh's office today. (That's what we call him).

I was fortunate to be having a righteous flare up that he was able to watch come to life on my arm. He asked me a bunch of questions including some that may in fact end up being pertinent.

1. Does Benadryl make it go away? Yes - for a while.
2. Am I allergic to anything? Yes - I AM ALLERGIC TO ALL THIINGS THAT GROW ON THE EARTH

The latter is only a slight exaggeration. I'm the person that when allergy testing is done they can't exactly tell what I'm allergic to because the test they do on your back just causes my entire back to become one huge swollen hive. "All the things," is pretty much my diagnosis. The things which grow in the earth and the things which have hair and live on the earth - I am allergic to them. I am allergic to beef. I have ISSUES clearly.

An autoimmune disorder is a possibility however, usually autoimmune related hives don't respond to antihistamine as they are NOT histamine related. This isn't an absolute but - it's most often true.

I have to admit that autoimmune thing has me spooked. My mom had various autoimmune issues and I'm terrified of walking her path due to a bad DNA load that I can't avoid. 

So he took many vials of blood and is running the gauntlet of bloodwork to see if anything jumps up. He's changed my medicine to basically keep me on one antihistamine or another at all times. With a dose of another antihistamine thrown in. 

While we talked, he explained that if it's an easy diagnosis and treatment we'll just devise it and go from there. If it's complicated he'll send me to the right specialist depending on what the tests say. 

His opinion is that because I'm what he calls "Hyper-allergic" (fancy medical talk for allergic every damn thing) that one of my allergies has chosen to express itself in a different way. I personally might have opted for interpretive dance or mixed media art but I guess I don't get to choose. 

I'm sitting here zoned out on the antihistamine he told me to take earlier and realizing I'm gonna go full zombie when I take one at bed time. I was going to go run but I don't see that happening. In fact the idea of finding pajamas to put on becomes more and more dear.

I'm just hoping I'm not fucked in some irreversible way. This is not fun.

A Brief Pause While I Whine

I've been in this weird place between too much activity, too many ideas and not enough time. Thus I've got a whole series of posts written in my mind yet I've got to pause them and whine about myself.
It's my body. It's betraying me.
The betrayal in minor in nature, at this juncture. It's hives. It might sound like nothing and in fact it started out as sort of a rather run of the mill "Hmmm I wonder what I touched that I'm allergic to" sort of thing.
Then it continued, and got worse.
The hives arrive in swaths, on my arms, my legs, my back, my butt, my abdomen and now this week my neck and face. They arrive intermittently and leave after I get to the point where I think "OK NOW I REALLY CAN'T TAKE IT ANYMORE" they simply fade away. They come they go. They arrive when I'm working, when I'm walking, when I'm dining. They erupt during work outs and fade away as it suits them to do. I'm in some sort of hell driven by burning, itching patches of skin that are driving me mad.
I've been a good sport these past few weeks. I have complained intermittently. If you're on my Facebook it might feel like I've been complaining constantly but rest assured, if that were the case you'd have removed me by now. In fact I'd be over there complaining this very instant if that were the case. But my foresight in complaining on Facebook and taking pictures actually provided me with very good documentation and timeline for my doctor, even if it was peppered with commentary like "IT WAS MUCH WORSE THAN THIS I PROMISE YOU" when I shared it with him.

It's been going on for weeks and basically according to the internet I'm going to die a horrible death. That's pretty much all I could discern. I tried apple cider vinegar and essential oils but alas science had to come into it and thus I sat in Dr Sexy van Gogh's office today. (That's what we call him).

I was fortunate to be having a righteous flare up that he was able to watch come to life on my arm. He asked me a bunch of questions including some that may in fact end up being pertinent.

1. Does Benadryl make it go away? Yes - for a while.
2. Am I allergic to anything? Yes - I AM ALLERGIC TO ALL THIINGS THAT GROW ON THE EARTH

The latter is only a slight exaggeration. I'm the person that when allergy testing is done they can't exactly tell what I'm allergic to because the test they do on your back just causes my entire back to become one huge swollen hive. "All the things," is pretty much my diagnosis. The things which grow in the earth and the things which have hair and live on the earth - I am allergic to them. I am allergic to beef. I have ISSUES clearly.

An autoimmune disorder is a possibility however, usually autoimmune related hives don't respond to antihistamine as they are NOT histamine related. This isn't an absolute but - it's most often true.

I have to admit that autoimmune thing has me spooked. My mom had various autoimmune issues and I'm terrified of walking her path due to a bad DNA load that I can't avoid. 

So he took many vials of blood and is running the gauntlet of bloodwork to see if anything jumps up. He's changed my medicine to basically keep me on one antihistamine or another at all times. With a dose of another antihistamine thrown in. 

While we talked, he explained that if it's an easy diagnosis and treatment we'll just devise it and go from there. If it's complicated he'll send me to the right specialist depending on what the tests say. 

His opinion is that because I'm what he calls "Hyper-allergic" (fancy medical talk for allergic every damn thing) that one of my allergies has chosen to express itself in a different way. I personally might have opted for interpretive dance or mixed media art but I guess I don't get to choose. 

I'm sitting here zoned out on the antihistamine he told me to take earlier and realizing I'm gonna go full zombie when I take one at bed time. I was going to go run but I don't see that happening. In fact the idea of finding pajamas to put on becomes more and more dear.

I'm just hoping I'm not fucked in some irreversible way. This is not fun.

The Places You'll Go: Day One

When someone dies there is an insane amount of stuff to do. I'm not sure if that's by design to keep the grieving busy, plugged into the "business" of life, but it's true. There are people to call, there are things to sign. There are documents to review. There are more people to call.

It's about a year and a half since both of my parents died and I still have those moments when I realize I never contacted person X. I also don't know how to get ahold of person X, if they're living, where they are now etc, yet at some point they were a significant part of one or both of my parent's lives and it pains me a little not to have been able to share with them that they died. Sometimes it's simpler, sometimes it's just that in the overwhelming moments after their deaths, I forgot.

It was a lapse like that last week that caused me to find out that one of my beloved aunties died via Facebook. Settling into the category of "where was I when I heard" is now the moment that I was sipping coffee in my kitchen and scrolling through Facebook when I saw it. A condolence to one Aunt regarding the other.

Aunt Debbie had died. A frantic phone call to my SIL who had only just recently heard also confirmed the worst.

So north we had to go, once again making the trip out of grief.

I have a short list of people who have known me longer than my memory extends. I don't mean random family who have known of me, rather I mean truly know me. Losing these people is a bit like losing some of my self, losing some of my history - the bits I don't recall. They know stories I don't know and once they are gone those stories are lost forever. The number of times I realize I need my mom to tell me something or remind of the details of something are legion - and growing.

We rented a van because ours is still crashed up and headed back toward the land of our people. We went to show support and love for Aunt Suzie, and love & respect to our Aunt Debbie who was a staple in our family.

Kids handle everything better than adults I think. Julia loved her Aunt Debbie hugely but seemed, despite being sad, to accept that this happened whereas I'm still compelled to rage. Maybe it's because little kids whole worlds are dictated to them, they don't assume things could go a different way.

That's probably the fairytale of being adult - you think you could've changed fate "if only".

Post Script: Julia spent a lot of time trying to decide what to wear to the funeral and settled on this.

While it wasn't what she actually wore, I feel like Aunt Debbie would have truly appreciated the spirit in which this plan was made.

The Places You'll Go: Day One

When someone dies there is an insane amount of stuff to do. I'm not sure if that's by design to keep the grieving busy, plugged into the "business" of life, but it's true. There are people to call, there are things to sign. There are documents to review. There are more people to call.

It's about a year and a half since both of my parents died and I still have those moments when I realize I never contacted person X. I also don't know how to get ahold of person X, if they're living, where they are now etc, yet at some point they were a significant part of one or both of my parent's lives and it pains me a little not to have been able to share with them that they died. Sometimes it's simpler, sometimes it's just that in the overwhelming moments after their deaths, I forgot.

It was a lapse like that last week that caused me to find out that one of my beloved aunties died via Facebook. Settling into the category of "where was I when I heard" is now the moment that I was sipping coffee in my kitchen and scrolling through Facebook when I saw it. A condolence to one Aunt regarding the other.

Aunt Debbie had died. A frantic phone call to my SIL who had only just recently heard also confirmed the worst.

So north we had to go, once again making the trip out of grief.

I have a short list of people who have known me longer than my memory extends. I don't mean random family who have known of me, rather I mean truly know me. Losing these people is a bit like losing some of my self, losing some of my history - the bits I don't recall. They know stories I don't know and once they are gone those stories are lost forever. The number of times I realize I need my mom to tell me something or remind of the details of something are legion - and growing.

We rented a van because ours is still crashed up and headed back toward the land of our people. We went to show support and love for Aunt Suzie, and love & respect to our Aunt Debbie who was a staple in our family.

Kids handle everything better than adults I think. Julia loved her Aunt Debbie hugely but seemed, despite being sad, to accept that this happened whereas I'm still compelled to rage. Maybe it's because little kids whole worlds are dictated to them, they don't assume things could go a different way.

That's probably the fairytale of being adult - you think you could've changed fate "if only".

Post Script: Julia spent a lot of time trying to decide what to wear to the funeral and settled on this.

While it wasn't what she actually wore, I feel like Aunt Debbie would have truly appreciated the spirit in which this plan was made.

Semi Trucks and Hot Wax

I'm busy having a midlife crisis or so I hear, and in the spirit of that I'm embracing new things and trying to expand my boundaries.
I did something quite new on Monday. I was leaving work to go meet my family to buy shoes for the kids since they were off for President's day, and got hit by a semi.
That was new.

I haven't ever been in accident as an adult, nor as a driver. I was in the car once when my mom was hit head on by a dude who crossed the center lane. It was before cell phones and I don't even remember it that well. It was pouring rain, and it all took a long time. Those things I recall.

This dude was stopped and then decided to back up and when it was all said and done the front of my van was slammed into his tires. Luckily I had actually stopped, thinking he'd see me and stop also. I had nowhere to go and watching that big old rig keep backing up was one of the least pleasant experiences of my week. I could have bailed out, had he continued to back up and smoosh my car. But luckily he felt or heard the impact and stopped.

So that's a thing I can say I have done. I have been hit by a semi. I think most people are not quite so fortunate as I. I've got this strained IT band thing, causing me some hip pain and soreness. I'm probably going to talk to my doctor about it again because it's not much better but all in all I know full well it could have been MUCH worse.

The other thing I did was add to my personal grooming routine. While it's pretty well established that I'm an eyebrow threading addict, and I love a good mani/pedi like all other surburban dweller females, now I've adding a new level of WAXING to my life.

I went and got the Brazilian wax.

I went to Brazilian Wax by Andrea which is a local chain and is RIDICULOUSLY CHEAP. It's supposed to be one of the best places around for this sort of shenanigans and I figured I am almost 50 let's live a little. I've done funky colors thanks to Betty Beauty. I've done shaving. I've done 70s porn bush. I've rocked the gauntlet with the except of adding a merkin. I thought it was time to spread my wings, so to speak.

So first of all, this isn't for the modest. I've had four kids so I'm all out of modesty. A small waif of a human, possibly an elf, with a shocking red color of hair came in and began chatting me up and she slathered lava on my crotch.

Oddly, it wasn't that bad, sort of like wow that's hot but then it got better.

We chatted about Betty Beauty (above linked) and various waxing things and the EpiLady of old and somewhere in all this chatter she began THE REMOVAL.

Honestly, it just wasn't that bad.

If you've ever had your eyebrows waxed okay yes, it feels exactly like that. It feels like that OVER a greater area of skin at one time but it's just exactly like that. It wasn't some sort of fresh hell of agony invented by the Great Satan to torture us ladies for Eve's sins. No it just was just, "Oh Damn" and then it was over. Now repeat that few times.

There's a bit of an indignity as you're making small talk with someone who's busily grooming your crotch but let's face it, you wouldn't be waxing off your pubes if you were hugely concerned about your dignity now would you?

There is nothing dignified about spreading your ass cheeks while laying face down so she can clean up your "rear area". If dignity is high on your list, leave this off.

I had to take a week off from working out after the accident, so I've spent it eating candy and losing my dignity at the hands of an elf human hybrid.

But hey, now I can say that's another thing I've done. I'm going back for legs and armpits - and will I keep the Brazilian?

Wouldn't you like to know?

Semi Trucks and Hot Wax

I'm busy having a midlife crisis or so I hear, and in the spirit of that I'm embracing new things and trying to expand my boundaries.
I did something quite new on Monday. I was leaving work to go meet my family to buy shoes for the kids since they were off for President's day, and got hit by a semi.
That was new.

I haven't ever been in accident as an adult, nor as a driver. I was in the car once when my mom was hit head on by a dude who crossed the center lane. It was before cell phones and I don't even remember it that well. It was pouring rain, and it all took a long time. Those things I recall.

This dude was stopped and then decided to back up and when it was all said and done the front of my van was slammed into his tires. Luckily I had actually stopped, thinking he'd see me and stop also. I had nowhere to go and watching that big old rig keep backing up was one of the least pleasant experiences of my week. I could have bailed out, had he continued to back up and smoosh my car. But luckily he felt or heard the impact and stopped.

So that's a thing I can say I have done. I have been hit by a semi. I think most people are not quite so fortunate as I. I've got this strained IT band thing, causing me some hip pain and soreness. I'm probably going to talk to my doctor about it again because it's not much better but all in all I know full well it could have been MUCH worse.

The other thing I did was add to my personal grooming routine. While it's pretty well established that I'm an eyebrow threading addict, and I love a good mani/pedi like all other surburban dweller females, now I've adding a new level of WAXING to my life.

I went and got the Brazilian wax.

I went to Brazilian Wax by Andrea which is a local chain and is RIDICULOUSLY CHEAP. It's supposed to be one of the best places around for this sort of shenanigans and I figured I am almost 50 let's live a little. I've done funky colors thanks to Betty Beauty. I've done shaving. I've done 70s porn bush. I've rocked the gauntlet with the except of adding a merkin. I thought it was time to spread my wings, so to speak.

So first of all, this isn't for the modest. I've had four kids so I'm all out of modesty. A small waif of a human, possibly an elf, with a shocking red color of hair came in and began chatting me up and she slathered lava on my crotch.

Oddly, it wasn't that bad, sort of like wow that's hot but then it got better.

We chatted about Betty Beauty (above linked) and various waxing things and the EpiLady of old and somewhere in all this chatter she began THE REMOVAL.

Honestly, it just wasn't that bad.

If you've ever had your eyebrows waxed okay yes, it feels exactly like that. It feels like that OVER a greater area of skin at one time but it's just exactly like that. It wasn't some sort of fresh hell of agony invented by the Great Satan to torture us ladies for Eve's sins. No it just was just, "Oh Damn" and then it was over. Now repeat that few times.

There's a bit of an indignity as you're making small talk with someone who's busily grooming your crotch but let's face it, you wouldn't be waxing off your pubes if you were hugely concerned about your dignity now would you?

There is nothing dignified about spreading your ass cheeks while laying face down so she can clean up your "rear area". If dignity is high on your list, leave this off.

I had to take a week off from working out after the accident, so I've spent it eating candy and losing my dignity at the hands of an elf human hybrid.

But hey, now I can say that's another thing I've done. I'm going back for legs and armpits - and will I keep the Brazilian?

Wouldn't you like to know?

The Currency of Love

Today during a mandated sweep and clean operation of Julia's room a discovery was made by her brother.

These are Julia dollars and apparently they're worth ten thousand regular dollars. You can also exchange them for love, which she says is endless. I had never seen them or heard about them until today, when they were unearthed in the much needed cleaning of her room.

I've been thinking a lot of thoughts lately, about love and feelings and since it's almost valentine's day maybe I've been inspired by candy hearts and decorative fat babies with arrows.

Different kinds of love have different prices out there in life. There's the kind of love you have for those first loves, those mistake loves that are how you learn what love is and isn't. You lose part of yourself in them, and you change based on what you learn. Sometimes there are loves that could've been the RIGHT one but the timing was wrong, and the price of the regret can be unending. You'll always wonder just a little bit "what if?"

The love for your children is different. My own experience was that the moment I became pregnant I began to change, and the fierceness with which I love my children is not quantifiable by man. A friend once said "I'd not only take a bullet for my children, I'd take a slow saw to the neck." That about sums it up to me. There is nothing I wouldn't do for them. I get annoyed when I have to get out of bed and parent in the night, don't be fooled. I don't leap out of like a fairy and flit about full of joy and happiness. But when there is coughing, or retching, or other sounds that aren't sleeping my eyes pop open and I listen. I get up.

Sometimes I open my eyes in the middle of the night and listen intently to them sleeping. In the room next to mine, just a few feet from my head, three boys slumber. I can hear the one who snores, and the one who rolls around and flops in his sleep, and the one who giggles in his sleep. I listen intently for the sounds that are the three of them. The girl is further down the hall and I'll have to creep down the hall and peek for a good inspection.

Then I go pee because I'm up and gravity is a thing and I had four kids so give me a break.

The love of my children has become a currency I'm paying in another way. I started working out because I was over 300 pounds and had a heart incident. It started out as vanity, I was ashamed of how I looked. I was ashamed that arthritis in my knee was keeping me from using stairs at work. I was ashamed that I tried to do aerobics and collapsed on the floor crying after 7 minutes.

I vowed I wasn't going to shop in fat girl stores any more. I was going to be SKINNY. No one was EVER going to yell rude things at me (they still do btw) and I was going to make sure no one could EVER refer to me as fat again with any sort of basis in reality.

Then eventually, despite that voice in my head saying all the stuff above, it became about being more healthy. My heart condition is a real thing. I actually have a couple of different things happening heart-wise, one because of the other, and they have names and sound super scary and everything. They are the sort of things that aren't really that big of a deal if you are healthy and stuff. They are the sort of things that people ignore and then one day they have heart failure and everyone goes "Wow dead at 50 who knew X could kill you?"

X can kill you. X will always kill you.

But the reality hit me in 2015 when both of my parents up and died. The first thing was that they'd both died of X, those things that might've been handled so differently if dealt with earlier. The second thing though was the reality that suddenly my brothers and I were orphans. At 46, 36 and 26 we now were on our own. Yes we're all grown but it was a sobering moment because you never really think you'll be orphaned yet there we were.

My own children are some day going to be orphans.  I have two children who will never, ever be able to do for themselves. The other two, if I died today, would be very sad but would also be FINE. They're smart, they're capable. The Jesuits say give us the child for the first seven years and we'll give you the man well, she'll be 7 this year and he's 14 and frankly - while I don't WANT TO DIE now, I'm not afraid of what will happen to them. I know solidly in my heart they will be fine.

But my twins....will not.

They need me and/or their father alive as long as possible to care for them. Maybe some day to over see where they go live when we can no longer care for them. So I go to the gym. I try to watch what I eat (some days more than others let me tell you). I am running. I'm terrible at it, but I also hate being terrible at things so I keep going. So when I'm sweating and I'm hurting, I'm paying part of the currency of love. I'm paying the price of loving them so much, and I don't regret it.

I regret eating whatever I wanted for 20 years, but not for loving them this much. I lift weights on Tuesday and Thursdays and push myself to run up that hill even though my legs are about to brick. I push and push and push. I have to lose more weight, not tons, but more to ease the strain on my heart from all this extra fat. I need to build strong bones and keep them as I age so that I'm not made weak too soon by the toll of years.

I'm putting it off, this aging thing. My vanity likes the smaller sizes but my heart likes it when it gets to NOT take blood pressure medicine and when the ridiculously expensive tests don't find anything bad beyond what's known.

I could say I want to stay alive just because I'm selfish and I want all of my days. But actually I want my days so that I'm here not just for me, but for them. That's the price of loving them. It's part fear, it's part just plain love. But it's real, and it's a currency I will gladly pay until the day I die.

The Currency of Love

Today during a mandated sweep and clean operation of Julia's room a discovery was made by her brother.

These are Julia dollars and apparently they're worth ten thousand regular dollars. You can also exchange them for love, which she says is endless. I had never seen them or heard about them until today, when they were unearthed in the much needed cleaning of her room.

I've been thinking a lot of thoughts lately, about love and feelings and since it's almost valentine's day maybe I've been inspired by candy hearts and decorative fat babies with arrows.

Different kinds of love have different prices out there in life. There's the kind of love you have for those first loves, those mistake loves that are how you learn what love is and isn't. You lose part of yourself in them, and you change based on what you learn. Sometimes there are loves that could've been the RIGHT one but the timing was wrong, and the price of the regret can be unending. You'll always wonder just a little bit "what if?"

The love for your children is different. My own experience was that the moment I became pregnant I began to change, and the fierceness with which I love my children is not quantifiable by man. A friend once said "I'd not only take a bullet for my children, I'd take a slow saw to the neck." That about sums it up to me. There is nothing I wouldn't do for them. I get annoyed when I have to get out of bed and parent in the night, don't be fooled. I don't leap out of like a fairy and flit about full of joy and happiness. But when there is coughing, or retching, or other sounds that aren't sleeping my eyes pop open and I listen. I get up.

Sometimes I open my eyes in the middle of the night and listen intently to them sleeping. In the room next to mine, just a few feet from my head, three boys slumber. I can hear the one who snores, and the one who rolls around and flops in his sleep, and the one who giggles in his sleep. I listen intently for the sounds that are the three of them. The girl is further down the hall and I'll have to creep down the hall and peek for a good inspection.

Then I go pee because I'm up and gravity is a thing and I had four kids so give me a break.

The love of my children has become a currency I'm paying in another way. I started working out because I was over 300 pounds and had a heart incident. It started out as vanity, I was ashamed of how I looked. I was ashamed that arthritis in my knee was keeping me from using stairs at work. I was ashamed that I tried to do aerobics and collapsed on the floor crying after 7 minutes.

I vowed I wasn't going to shop in fat girl stores any more. I was going to be SKINNY. No one was EVER going to yell rude things at me (they still do btw) and I was going to make sure no one could EVER refer to me as fat again with any sort of basis in reality.

Then eventually, despite that voice in my head saying all the stuff above, it became about being more healthy. My heart condition is a real thing. I actually have a couple of different things happening heart-wise, one because of the other, and they have names and sound super scary and everything. They are the sort of things that aren't really that big of a deal if you are healthy and stuff. They are the sort of things that people ignore and then one day they have heart failure and everyone goes "Wow dead at 50 who knew X could kill you?"

X can kill you. X will always kill you.

But the reality hit me in 2015 when both of my parents up and died. The first thing was that they'd both died of X, those things that might've been handled so differently if dealt with earlier. The second thing though was the reality that suddenly my brothers and I were orphans. At 46, 36 and 26 we now were on our own. Yes we're all grown but it was a sobering moment because you never really think you'll be orphaned yet there we were.

My own children are some day going to be orphans.  I have two children who will never, ever be able to do for themselves. The other two, if I died today, would be very sad but would also be FINE. They're smart, they're capable. The Jesuits say give us the child for the first seven years and we'll give you the man well, she'll be 7 this year and he's 14 and frankly - while I don't WANT TO DIE now, I'm not afraid of what will happen to them. I know solidly in my heart they will be fine.

But my twins....will not.

They need me and/or their father alive as long as possible to care for them. Maybe some day to over see where they go live when we can no longer care for them. So I go to the gym. I try to watch what I eat (some days more than others let me tell you). I am running. I'm terrible at it, but I also hate being terrible at things so I keep going. So when I'm sweating and I'm hurting, I'm paying part of the currency of love. I'm paying the price of loving them so much, and I don't regret it.

I regret eating whatever I wanted for 20 years, but not for loving them this much. I lift weights on Tuesday and Thursdays and push myself to run up that hill even though my legs are about to brick. I push and push and push. I have to lose more weight, not tons, but more to ease the strain on my heart from all this extra fat. I need to build strong bones and keep them as I age so that I'm not made weak too soon by the toll of years.

I'm putting it off, this aging thing. My vanity likes the smaller sizes but my heart likes it when it gets to NOT take blood pressure medicine and when the ridiculously expensive tests don't find anything bad beyond what's known.

I could say I want to stay alive just because I'm selfish and I want all of my days. But actually I want my days so that I'm here not just for me, but for them. That's the price of loving them. It's part fear, it's part just plain love. But it's real, and it's a currency I will gladly pay until the day I die.

Breathing Is The Hardest Thing To Do

The subject of resentment has come up quite a bit lately with friends as we talk about the world of having disabled children. My friend Christine talked to me about how another blogger she was reading seemed so ANGRY, so upset with her child and that it made it hard to read her. I think that's an easy trap to fall into. I also think that maybe the blogger is writing out her frustrations and sorrow so maybe that's how she keeps from spilling it out onto her child.
We've all read those stories, parent of special needs child commits murder, or murder/suicide, because they can't deal with it ONE MORE MOMENT. Sometimes it's not that simple.
I sat once years ago in a training session with about 40 other special needs parents where we were supposed to learn about waivers and other government help we could get for our children, or at least learn what help there was. A woman sitting a few seats away from me was asking questions about her son who was quadriplegic with many other health issues. I watched her go from hope to exasperation, to hopeless as  the sea of forms and nebulous certainty of what the future held became clearer. She literally said the words, "No one will take my child when I die, no one will help me. At this point I guess when I think I'm close to dying I guess I'll have to kill us both."

Then she started crying.

I understood more about the future in those moments than I had ever conceived possible. What I realized was that you have to sometimes accept the lesser version of your dreams - sometimes it's requisite to your own sanity.

I'd be lying if sometimes I don't break down into tears at story time in the evenings, because I have 12 year olds who still delight at me reading Sandra Boynton books in silly voices. I break down because I wonder who will read these books to them when they are old men with grey hair and I'm long dead. Will they miss these books? Will they be someplace where they are loved? What is going to happen to my children?

The flip side of that is that I accept that I can't completely control what happens. I can make plans, I can try to make arrangements and sort things to the best of my ability. I can't let my soul be destroyed if they don't work out exactly as I want them to. There are a lot of moving pieces in this life, and they don't get nailed down very well when you're a special needs mom.

I get frustrated. I get annoyed when Miles is being a shit head because sometimes he is LEGITIMATELY being a shit head. I get annoyed when either of them is having an autism melt down. But I can't let that feeling of "everything is bad" that might exist in moments or even hours consume me. SOMETIMES they do. Sometimes I cry. Sometimes I text my best friend the details of the poop horror show that can be my life.

And then I get on with life.

I make a decision every day, as corny and pinteresty (that's totally a word now) as that might sound. I'm going to be happy. I'm going to pursue things that make me healthy, improve my life, and I'm going to try to be a better person and mom. I'm going to FAIL A LOT. But I'm also going to not fail on some things and that's good to.

That doesn't mean that what I'm writing here is a sugar coated more delicious version of the pain and anguish it is to have two children that aren't what you dreamed of. It just means that I've sorted out how to deal with it, and how I'm not going to let it ruin the one pass I get through this life. This works for me. It might not work for you.

As for me, I look back on photos like this and think man - if I survived that, I can do anything.

You just have to remember to breathe. Sometimes that's the hard bit.

Breathing Is The Hardest Thing To Do

The subject of resentment has come up quite a bit lately with friends as we talk about the world of having disabled children. My friend Christine talked to me about how another blogger she was reading seemed so ANGRY, so upset with her child and that it made it hard to read her. I think that's an easy trap to fall into. I also think that maybe the blogger is writing out her frustrations and sorrow so maybe that's how she keeps from spilling it out onto her child.
We've all read those stories, parent of special needs child commits murder, or murder/suicide, because they can't deal with it ONE MORE MOMENT. Sometimes it's not that simple.
I sat once years ago in a training session with about 40 other special needs parents where we were supposed to learn about waivers and other government help we could get for our children, or at least learn what help there was. A woman sitting a few seats away from me was asking questions about her son who was quadriplegic with many other health issues. I watched her go from hope to exasperation, to hopeless as  the sea of forms and nebulous certainty of what the future held became clearer. She literally said the words, "No one will take my child when I die, no one will help me. At this point I guess when I think I'm close to dying I guess I'll have to kill us both."

Then she started crying.

I understood more about the future in those moments than I had ever conceived possible. What I realized was that you have to sometimes accept the lesser version of your dreams - sometimes it's requisite to your own sanity.

I'd be lying if sometimes I don't break down into tears at story time in the evenings, because I have 12 year olds who still delight at me reading Sandra Boynton books in silly voices. I break down because I wonder who will read these books to them when they are old men with grey hair and I'm long dead. Will they miss these books? Will they be someplace where they are loved? What is going to happen to my children?

The flip side of that is that I accept that I can't completely control what happens. I can make plans, I can try to make arrangements and sort things to the best of my ability. I can't let my soul be destroyed if they don't work out exactly as I want them to. There are a lot of moving pieces in this life, and they don't get nailed down very well when you're a special needs mom.

I get frustrated. I get annoyed when Miles is being a shit head because sometimes he is LEGITIMATELY being a shit head. I get annoyed when either of them is having an autism melt down. But I can't let that feeling of "everything is bad" that might exist in moments or even hours consume me. SOMETIMES they do. Sometimes I cry. Sometimes I text my best friend the details of the poop horror show that can be my life.

And then I get on with life.

I make a decision every day, as corny and pinteresty (that's totally a word now) as that might sound. I'm going to be happy. I'm going to pursue things that make me healthy, improve my life, and I'm going to try to be a better person and mom. I'm going to FAIL A LOT. But I'm also going to not fail on some things and that's good to.

That doesn't mean that what I'm writing here is a sugar coated more delicious version of the pain and anguish it is to have two children that aren't what you dreamed of. It just means that I've sorted out how to deal with it, and how I'm not going to let it ruin the one pass I get through this life. This works for me. It might not work for you.

As for me, I look back on photos like this and think man - if I survived that, I can do anything.

You just have to remember to breathe. Sometimes that's the hard bit.